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Joined: Mar 2006
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I am so confused and I am hoping that someone can give me a realistic opinion. My Dad was diagnosed with SCC of the tongue in July 05. His first surgery, a partial gloss and right neck dissection was performed on Sept. 1st, 2005. Upon receiving path. from that surgery it was shown that the margins were clear but there were 4 out of 35 lymph nodes infected. He was put through a 7 week cycle of radiation and chemo. which ended in early December. In February he started to feel a hardening in his tongue again and was bisopied. It was the cancer. Over the next month he was referred to a well know CCC and his new Dr., (not the one that did the first surgery,) told us that this was a very grave situation. He said that he would order a PET/CT and if it had spread, there was nothing he could do. If it had not spread, then the only option was a total gloss., full neck dissection and possible laryngectomy. The scan came back clean and he had the surgery on April 13th (No laryngectomy, yeah!) His margins this time were also clear, but 5 out of 45 lymph nodes on the left and front part of his neck were affected. He was released on May 3rd and he came home with us. 4 days later, (last night,) he is back in the hospital. His swelling, which was always severe, moved up his face into his eyes and around his temples. I just got a call from a palliative care physician at the hospital who was saying that he may never go home to live as he did before. I know he is not going to recover completely, but that WAS our goal with this surgery, and I thought that was understood!!!! I thought that this surgery would give him a 20% chance, (I know it is small,) that the cancer would be removed and he would go into remission for PERHAPS years! I know that still left an 80% chance that it would not, that it would reoccur within 18 months, but the Dr.s made such a big deal out of the clean margins on his second surgery that I thought, WOW, this is much better than we expected, maybe we have a fighting chance!!!!!

My question is this.....am I crazy?!?!?! Am I just setting myself up for a huge disappointment???? I need to know what the reality is, and I don't think that I am getting a clear picture of my Dad's prognosis. If he truly only has 18 months to live, we have already spent 1 of those months flailing around.

Please, any thoughts would be appreciated. We have an appointment with the ENT surgeon, palliative care Dr. and social worker tomorrow, but I want to be realistic.

Joined: Jan 2003
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Did the doctor tell you the reason of that severe swelling ? I had real bad swelling after neck disection, it took about 2 years to get back to a new normal


WZ | Stage 4, Tonsillar Cancer Aug, 2002
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They think it may be lymph fluid??? They started him on steroids last night and he is looking better.

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Jill, I think the only reality anyone can know for sure is that it is/was cancer. From what you typed, I don't think it was a very nice comment from the palliative care doc. It was an insensitive comment and much too early to know. My observation has been that some physicians tend to speak too much and paint out every worst case scenario. They cannot predict the future.

I remember a comment I heard outside the hall of my room in the hospital between a nurse and the late night doctor making rounds. I was in and out of sleeping so they didn't know I could hear them. The nurse asked what was in store for me and my future? The doctor painted a grim picture about my survival for her. I was haunted by that conversation for a long time (perhaps even today)

That was over 5 years ago and I wish I had gotten out of bed and made a wager with that Doctor. My point is you need to have hope and they should not take hope away from anyone.

As far as the swelling, it almost certainly is lymphedema, the result of surgery. It will get better over time and he can get physical therapy to help. He may look pretty beat up for a while but it probably has nothing to do with cancer. The lymphatic system moves a fair amount of fluid. By removing the lymph nodes on both sides of his neck, the path for this flow is now restricted. It will take time for his body to adjust.

Live each day, one at a time!


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

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